Success with helping someone

[ewford]

Been working with a woman that previously been diaged with MS, Parkinsons and now ALS.  50 yrs old.  I met her just by making conversation at an ACE Hardware.  She is wheelchair bound.  I talked to her about all the information I had accrued from research and some of the posters here.  She got tested properly.  High WB, Bartonella and Mycoplasma Fermentans-Incognitus.

POW!   Just from saying  "Hi"  She is now being treated and will probably walk and recover.  I hope ya'll are/will do the same.  How many people can we help/save.

[JackieCalifornia]

You'll be fine!  Let us know how it goes.  

[drsdonthelp]

I will take all of what you guys have said and wrap it up gently and neatly so I am not scaring the beeejeebers out of these kids. I know,, this stuff is very overwhelming, and the movie under our skin really got to me, so i wll have to speak about the tidbits of that movie in a more subtle kind of way.

I hope I do ok.. I am worried but I am normally a calm and easy spoken person, so that will be to the benefit of talking to teenagers.

Thanks everyone :)

[JackieCalifornia]

I agree with Wonko.  Well said.

I know how hard it is, once one has a diagnosis of Lyme, not to see it everywhere in everyone.  I was SO jazzed when I finally was diagnosed that I exuberantly wrote an old old friend who has has Lyme for decades that, now that I had a diagnosis, I would figure out the cures out there and fix us both.  She kindly didn't tell me to get a grip, and gradually I came to understand that Lyme is a long road.  There is a balance between informing people and scaring or overwhelming them with too much info.  Gently, gently.

[wonko]

I try to be helpful, but I'm something of a "closet Lyme patient."  While I come online to open forums for support and to participate in discussions, I am not in general open about my health situation.  Therefore, in "real life" I rarely speak up about Lyme and co.

Even when reaching out to people online, I personally prefer to use something of a light touch.  Years ago, after one of my very first posts on this site (in the undiagnosed symptoms community), I got a private message through MedHelp from a member who wanted to inform me about Lyme disease.

However, the message was complete "information overload" for me, and included many drastic and dramatic remarks and links to many outside websites, etc.  

I experienced that type of overbearing and overstating communication about Lyme disease with several other people while I was still undiagnosed, and each time my response was to further dismiss Lyme as a possibility.

It is also my opinion that if a person already has some other diagnosis, it can come across as offensive to suggest an alternative, even if your intentions are nothing but good.  

I think part of the problem is that, since Lyme is something of a contested disease (at least in the chronic form), the diagnosis comes with very little validation.  On the other hand, if a person thinks they have something better understood (both by MD's and the general population), then that diagnosis (or possible diagnosis) can provide some comfort to the person.

The lack of acceptance and understanding (or even belief) for this illness is a big part of why I'm not open about having it, and a big part for why many of us can't get proper time off from work for treatment, etc.  To ask a person to give up the validation they get from their diagnosis with something other than Lyme is, in my eyes, a major request.

I think what upsets me a lot is the number of people who end up being diagnosed with "syndrome" without being diagnosed with an underlying condition.  A syndrome is nothing more than a collection of symptoms, so it is just a label.  

I think fibromyalgia is defined differently by different folks, but the more mainstream definition is that it is a syndrome.  Yet it seems that many  stop looking for an underlying cause to their ailments once they are labeled as having fibro.

Same goes for chronic fatigue syndrome:  Unless the trigger/cause for it is known, it seems like a meaningless diagnosis.  

I consider myself to have both fibromyalgia and chronic fatigue due to my chronic infections, and I think each syndrome has multiple triggers other than Lyme and co.  But it makes me sad when people stop short in looking for answers.  And don't even get me started on what I think of the TV commercials for fibromyalgia medications...

So I guess I'm a bit scattered in my views here:  On the one hand, I respect the hesitance others may have in considering Lyme and co, and personally am not an activist.  On the other hand, it is sad to think of how many people with treatable conditions are not getting the help that they need.

[ewford]

@Jackie.  I saw that too.  That is a travesty.  I also just read that the Gov't wants to crack down on OTC meds that us Lymies use :ie Grape Seed Extract.  I also read that the Gov't has been trying to get information sensored through the internet via pushing searches tword certain websites or info.  That is WRONG and I see so many problems with that.

[ewford]

Pam, the Lymes doctors say it can be.  If HIV can be transmitted that way, there is no reson Lymes cannot.  I would leave it as "there is too much evidence that it could be possible with spouses becoming ill w/ same symptoms for it to be ignored.  I feel if kids knew there was a disease that was this debilitating caused by a few fleeting moments, and there was a possibility of transmission, it would be worthwhile bringing up.

@Ness....I felt the same way as you.  I had a woman contact me after I showed her "Cure Unknown" and she told me she had several female friends diaged w/ Fibro and other issues.  She wants to get them together and have me give some info to them at a roundtable.  All I did was open my mouth and said "How are you?"  I do this every day.  People are shy to talk about an autoimmune disease because they feel ashamed since few understand their illness.  I just bring that out into the open and they open up to me.

[JackieCalifornia]

Pam,

About sexual transmission of Lyme, I think the fair answer might be 'maybe.'  There is still much not known about transmission methods.  

(I just did a little searching online and ran across a real howler of a website, called the American Lyme Disease Foundation.  The main page has a bunch of good basic questions about Lyme and its diagnosis, transmission and treatment, and the answers just didn't match the other things I read .... so I scrolled down to the page with the board members' names, and whaddaya know, Wormser and Steere, the researchers at the IDSA who have been stonewalling on Lyme subjects for decades now.  They make flat statements like 'Lyme can only be transmitted by deer ticks' -- which makes no screaming sense.)

I have read other, reputable authors who discuss transmission across the placenta to an unborn baby, the possibility of sexual transmission, and so on.  Rather than over or understate the still murky boundaries of Lyme, I think 'maybe' is a good answer, that the scientists are still working on understanding Lyme.  

[Ness78]

My new goal is to be more open about this disease.  I am by nature a very very private person.  I have found that the times that I do share, I always make an important contact. It is how I moved toward diagnosis.  

The ILADS conference was in Toronto.  I live an hour away. I was so upset when there was absolulety no local news covereage on it...I realized I cannot just sit back and hope others will do the work.  

Thanks for the inspiration.

[drsdonthelp]

Hello... I am hoping I can make a big difference !!

It figures that my kids are sick, I feel like crapola, I have been sneezing all day, my nose looks like rudolph and I have a line of cold sores on my top lip from blowing my nose with a paper towel because I ran out of tissues, so ouch!!

So tomorrow I will probably be back at the doc's office for my daughter this time, then Thursday, try to talk to a group of kids feeling very uncomfortable and trying to sound like I know something about all of this, and then Friday, back to my LLMD!!

If these kids ask if this can be sexually transmitted, what is the answer to that??? I see different responses so I don't know how to answer that correctly. If you have any other info. I should pass on, PLEASE let me know, I will take notes and have my cheat cards with me. LOL

Thanks so much for your encouraging words!!
Pam

[ewford]

  Met another woman today, at the bank.  She looked tired, lethargic.  I have made conversation w/ her before.  Asked her what was wrong.  told me of symptoms.....after hiking w/ her husband, she had "red spot that developed ring around it".  Her doctor said she had ringworm.  Now 3 months later, she has Neuro Lymes.  

Wishing you make a difference Pam.  Make sure they can access you after the speaking engagement if they have further questions.

[drsdonthelp]

Thanks guys!!! I hope she takes my advice!!!

This Thursday, I have to go to my nephews school to speak in front of his class for his Lyme report. I will be spreading more of my good cheer about nasty ticks and what they bring us!! Wish me luck!!

Hugs,
Pam

[nutrinut_bob]

Good for both of you!  Now if only every such good turn would equate to 10,000 dead micro-vermin in us!

[ewford]

excellent post Pam!

[drsdonthelp]

You wouldn't believe the amount of people I have met and discussed this to the fullest with. I had to bring my son to the doctors yesterday and while I was sitting in the waiting room with him, a woman came over and sat next to us and started to have a coversation with me. She actually started to talk about some personal things about herself with me (she must've felt comfortable enough) and then said alot of her issues started after a spider bite........ Well.......................You know that did it for me!!! LOL

I said, "Spider bite?" How big was the spider? Are you sure it was a spider and not a tick? And she said, she didn't know what a tick looked like, sooooo,,,, I pulled out my phone and showed her a picture of a tick!!

She couldn't believe it!!! She said, "OMG, I think that's what it looked like!" I told her that she needs to keep an eye on her symptoms and maybe request some blood work to check for lyme. She said that right now, she has been to several doctors that have told her the "fibro, lupus, CFS story" and I told her to look into it alittle deeper and not just settle for any "title" that the doc. wants to lable her with and that it could be something else that is causing this.

She was so grateful for my information, and I told her that I am going through the process right now regarding getting a diagnosis.

I said it before, if I get an actual diagnosis.. I will feel more comfortable with getting the word out more publically, because then I can say I am speaking from personal experience.

It is definately a great feeling to spread the word and there are people that listen!!!

Pam